I keep trying to keep trying to keep trying – to be funny, to be positive and all that – but sometimes there is just no point in trying to keep trying when it’s all downhill anyway.
Parkinson’s disease is an absolute shit of a disease; it sucks all of the joy out so that the laughing stuff is knifey, cynical, brave but hopeless.
When I went to pick Anthony up today, I hoisted him up off his chair but then somehow lost him and he slid to the ground. I had to get a nurse to help me pick him up and for the rest of the day (we went to my mother’s for lunch) he kept saying I made him fall in a half-jokey way – barbed wire.
By the time we’d had lunch at my ma’s, seen Arthur, and gone back to Anthony’s nursing lodge, I was ready to fight someone, anyone, but there was nobody to fight. So I just drove home to the farm, thinking about my conversation with Anthony in which I said, “I haven’t abandoned you – you have abandoned me!”
Apparently you are not supposed to ask why? You are supposed to ask what? Well, as far as I’m concerned, the what can get over itself because it is the why that makes my heart beat so thunderously.
Why does this Anthony, pictured only 18 months ago, not resemble the Anthony I see now? Why?
Unbearable.
jmgoyder 
You don’t have to be humorous all the time, sometimes you just have to vent, let all the pain and fear and anger boil over and spew out, I think you’ve more than earned the right, you keep venting, I’ll keep reading.
No fear!
Julie–have been there and done that with a different disease–all I can say is–it is because you love so strongly that you are hurting as strongly, and I wish I could give you a giant hug. Have to give it to you this way, though–hope you feel its tightness.
((((Julie))))
Thank you so much Susan!
Julie, your question has no answer! Trust your faith and your fate. Otherwise you could spend the rest of your life asking the same question over and over and still will be another why?
Certain life situation are best to face them one day at the time. Be strong dear!
Thanks avian101 – you are right!
You are allowed to not be up and funny all the time! I love this picture. Anthony has a kind face, a gentle, warming and disarming smile. I can see why you long for this. You are telling a beautiful human story and I feel honoured to hear it. My good thoughts and prayers are with you….I wish I could do or say more…there are no words but to thank you for sharing your journey.
My sense of humour came back (kind of) today – gotta go get Ants for the day again.
I am so sorry, Julie. It has been so terrible for all of you.
Sorry for the rant – it just galloped out of my throat!
i am sure it must be different, with Anthony being your husband it must be different, but dealing with my brother seems the same as you
So very similar.
i actually learn a lot about Al through reading your posts
I learn from you guys too – you and Al!
It sucks, doesn’t it? But my sisters and I have come to accept that the mom we see now isn’t Mom. It’s not her fault. The Alzheimer’s has taken away the woman who loved and raised us. The love is still there, on her part as well as ours, but she’s not the same person. She cries and says mean things when she’s not happy. She tried to kick Patty when she wasn’t fast enough putting the foot rest up on her wheelchair. She tried to bite me, but luckily, her false teeth were on the nightstand. It’s not Mom. Parts of Mom are in there, but the disease controls the rest of her. Your Anthony’s struggling with the same problem. So are you. And I’m a “why” person who shakes her fists at the heaven, and to be honest, it makes me feel better. It at least lets me acknowledge that the whole thing stinks. I give myself a set time to feel sorry for myself and wallow for a while, and then I get on with my life. Hang in there. It’s not easy.
Yes I try not to vent on the blog but sometimes …. Very had re your mother.
I’ve seen it take the life right out of a relative of mine. From intelligent, active, and vibrant, to a body with remnants of the person flitting around in his head. It’s very hard to watch. Imagine how hard it must be to live it. In those lucid moments when you may be aware of what has happened, it must be terrifying.
Horrible.
Yes…I cry with you…absolutely heartbreaking…{{{{hug}}}}
There are worse diseases but this one is particularly cruel.
Our family question was: Which is worse – a disease that affects the brain, or a disease that affects the body? Parkinson’s does both, and it’s like fighting hell.
I couldn’t express it better than how you have.
You ask: Why does this Anthony, pictured only 18 months ago, not resemble the Anthony I see now? Why?
Because Parkinson’s has taken him frm you. I’m so sorry sweetheart!
I’m honestly glad to see that you are not able to keep the front of trying to funny up. I thought you amazing all this time in how you cope, sometimes seeming to be almost angleic like. It’s really comforting for me to find that yes you struggle. Being funny, optomistic, positive, etc. is all good, but ts exhausting at points. I know, I do the same because of being in pain 24/7.
Thanks for sharing this my frend!
Wise words, my friend – I am definitely no angel!
I wish I could just hug you and let you cry and rant about everything you are going through. You are so brave to share it all with us.
You are very brave to listen and support – I am grateful!
I think you have every right to ask Why? And every right to be angry too 😦
AOkay.
I liked your post, for the way your write and express, not for the content! I wish I could offer any consolations, or help, but all I can offer you is a big hug from far away and a prayer that you and your Anthony will have an easier time…….hugs….
You are very kind, Angela – thanks. Julie
Awww. *hugs*
u2
damn it all to hell! that’s all I can say.
Yes!
That’s an unanswerable question, I’m sad to say. My heart goes out to you.
Thank you very much – means a lot to me.
I totally understand your sentiments. There is NO reason nor rhyme for it, it just is. My heart feels your pain.
And you know!
life is unbearable at times – you share and I hope we give back – you bring tears to my eyes
Today is gonna be better – off in a minute to pick Ants up for the day again.
((((Hugs))))
Thank you.
The unbearable is unbearable but somehow underneath are the “everlasting wings.” M.L.
You sound just like Dad – brilliant.
I’m so sorry to hear that. PD is a very cruel disease and it’s terrible that more hasn’t been done to find a cure. Sometimes I think it’s the companies that make the drugs – if they found a cure we wouldn’t be needing to buy their drugs. I do hope things improve for you.
There is a fairly successful surgical procedure but Anthony is too old for it.
Hugs Julie… I was so sad when I first read this I could not respond. This just all seems unfair and so cruel. I wish I had answers or words of wisdom. Instead I will hold you in my heart even closer…xo
You are so amazingly generous because the first person I thought of after I hit ‘publish’ for this self-indulgent post was you and then I felt embarrassed to be moaning emotionally when you are moaning physically in dignified silence. I adore you.
Yes, and it’s just fine, perfectly normal and cathartic to be completely miserable about it at times
Yes I think you are right!
Some questions just….have….no answers… (but it doesn’t stop one asking the questions).
You can’t be brave & funny & strong all the time.
Try just being brave & funny & strong for the brief time you spend with Anthony and just let us, your readers, deal with the rants. We’ve got plenty of time to listen and plenty of words of encouragement to keep you going. After all, that’s why people read – they read to know they’re not alone…….
(now, who wrote that sentence? was it C S Lewis?).
Thanks Victoria – I have been feeling a bit stupid and exposed after my rant. Your words are so wise. Today with Ants home I did all the light-hearted stuff and it was great. Now I just want to sleep for a few days – hehe! He is exhausting and I told him so but only jokingly! Juliex
The way you are feeling and the questions you have are understandable given the circumstances. Such an evil disease!
Yes it really is an evil disease.
It is ok to scream sometimes because it is just “NOT FAIR!” Keep writing and know that many of us out here in the Blogesphere know your pain. It is lonely and exhausting and makes no sense.
Thanks DD – the winter gloom seems to make it worse – screamingly yours!
Yes – you just turned to winter and me to summer. Remember that winter solstice marks the shortest day for you, so now every day will get lighter. 🙂 Day by Day.
Yay!
I understand your humor conundrum. I often face the same challenge – though for not the same reasons, obviously. I hope you have realized by now that we are not fair-weather friends who will only stick around for the funny parts!
You are very good friends – that is for sure!
Honestly, I’m surprised you hold it together the way you do. You’re awfully strong! There is still nothing on the horizon to treat it? Wretched 😦
Big hugs, Miss Julie.
XO, J
Not strong at all – am in midst of a sobfest!
I’m sorry hon. I can’t imagine any of what you’re dealing with. Let’s use the word resilient, shall we? You are resilient. Look at all those bird posts! They made me feel lighter 🙂 Give yourself a big hug for me. XOXO
You too MM!
absolutely unbearable!
Yes.
So heartbreaking… I feel for you all — you, Anthony and Son! When it’s someone at the very heart of your being, it is nearly impossible to completely let go of “what was” and allow “what is” to reframe itself in your minds. Like a stranger would. Like you did with Joe. The pain holds you back, but I think the fear for the future is a big factor too. Fear for him, for you, for son…
I so wish it was different for you all. Big hugs!
Just before Ming (Son) went to milk the cows, I started telling him about my day with Anthony (I had just got home) and when I got to the bit where I couldn’t get Anthony out of the car because he was too heavy, Ming said ‘please, Mum, don’t tell me any more’ so I shut up!